I had a long conversation today, with Sam (my surrogate cousin, my imaginary first love, the girl my brother and I used to fight over).
I had to tell her, in far too few words and in a conversation broken by lousy cell signals and interrupted by teenage children, about the looming loss of the last of our parents.
Sam and I are not related by blood; her mother Penny was my mother’s best friend. I have very little in the way of true blood family; we’re some odd California branch of a family tree with roots in North Carolina, Texas, Oklahoma and New Mexico. I had no idea what aunt or cousin meant growing up, because Penny and her daughters were closer, physically and emotionally, than any blood relation. They were my best friends, and meant as much to me as my own brother did.
We lost Penny to cancer fifteen years or so ago; I can’t recall the date because, for reasons too stupid and painful to address at the moment, I learned of her death and funeral months after she died.
Not so long after – twelve years ago, give or take – my father was taken down by a heart attack, and then my brother that same year, by his own hand.
My mother’s the last of our shared parents.
My mother’s decline has been steady. Born in the late twenties and a child of the era between the world wars, she took up smoking early, and kept that habit for nearly seventy years. Only a diagnosis of emphysema stopped her, and to her credit, she stubbed out that last cigarette and never looked back at it. But anxiety was really the trouble. Because anxiety masked a condition far worse than she’d admit to, and worsened her already severe shortness of breath.
I do not know when she was diagnosed with it; she never told me. I learned of it only when I had to drive her to a doctor’s appointment. My mother, typically, had been denying her condition, refusing treatment, hiding her inhalers from me. Prescribed oxygen 24×7, she was using it ‘as needed’, which means only when she felt like it. And of course, she’d been lying to her doctor as well.
My mother, from the time she was a child, has felt that she must ‘keep up appearances’, as her mother taught her. Which means always pretending to authority, always showing a brave, funny, capable face. Yet, the other side of her is a devout counter-culturist; authority is something to be resented, to be defied. She taught me to break the rules without getting caught, taught me to defy and flaunt. And so, of course, she would present a front to me and to her doctor; to me, she denied any significant medical issue, and to the doctor, she’s say yes I’m using my oxygen and yes I’m doing the exercises and yes, I’m feeling pretty good.
But she wasn’t fine. And she wasn’t following what the doctor said. And she wasn’t telling me any of it.
It wasn’t until her emphysema took a drastic turn, a couple of years ago, that she finally needed help. And only when speaking directly to the doctor did I find exactly how my mother had been denying the severity of her condition.
Of course, when I tried to talk to my mother’s doctor about it, about mom’s life-long mental health issues, about her denial, about her crushing anxiety and panic attacks, the doctor brushed it aside. Never mind my insights as her son, never mind my obsessive medical research (i read medical and psychological diagnostic and treatment texts for fun); I was a fucking layman and my opinions carried all the weight and interest of an expulsion of gas.
My family, what I know of it, has a history of mental illness and addiction. My brother suffered for many years from an almost entirely imaginary condition; my maternal grandmother was both a severe alcoholic, and bi-polar. Her mother had some other ailment, the details of which I’ve never heard. So it’s no great surprise that my mother suffers an impressive stew of conditions. She’s always spoken of agoraphobia, though I frankly think it’s more skin to a social anxiety disorder. She also frequently shows signs of obsessive-compulsive behavior, and when she was younger, and uncontrollably violent temper. Anxiety and panic have been part of her life so long she doesn’t ever recognize them.
Of course there’s no mention of any of this in her Kaiser charts; she’s never sought any significant treatment for it. It’s news to my mother’s doctors that she has any anxiety at all, let alone my assertion that she’s been largely crippled by these conditions.
After we saw her doctor together, my mother accepted, with very little fight, that she needed to keep her oxygen on all the time. However, she also decided this meant she could no longer leave the house.
My mother managed to beat back her fears for most of her life. She worked, successfully, in libraries and book stores, eventually becoming a significantly respected children’s literature expert. She participated in running our school, went to rock concerts with us (because she loved the music, not because she felt we need any chaperoning). She was reasonable social and reasonably active most of her life. But when my brother’s demons slowly won their battle with his sanity, she seemed to give up, giving in to his, and to her own. When he became a shut-in, she first facilitated, and then validated is choices to hide from the world and resist psychiatric care. When my father died, se dedicated herself to the care and feeding of his madness, cutting the pair of them off from any help. She participated in his decline, and assisted in his suicide.
After my brother’s death, my mother gave up any significant relationship with the outside world. So when she put on the oxygen cannula, something that, to her, was some vast flashing beacon drawing the very attention she’d spent her life fearing, she closed and locked the the door between herself and the outside world.
For a time, I thought this was temporary. She’d been managing her life effectively, shopping, cooking, cleaning. It seemed reasonable to me that she would need a bit of time to adapt to living on oxygen, to carrying a tank to the market, to the logistics of an umbilical. I happily stepped into the role of care-giver, shopping for her, running errands, making sure her car stayed in working order. I worked with her on ways to rig her portable oxygen tank to minimize discomfort, explained why it worked differently than her home unit.
It would be temporary, I assumed. My mother, her entire life, has been fiercely independent. She has never asked for help; she’s never wanted care, never wanted attention when she felt ill. Like me, she wants to do it herself, and would rather be left alone than tended to. So of course i assumed she’d remain independent, not letting a trivial matter like a bottle and a tube daunt her.
Somehow, though, this one thing, this utterly insignificant thing, was her undoing. Every moment fearing she was being looked at, every imagined judgement, every side-long glance came together in a laser-focus on the clear tube up her nose. She would even take it off and hide it when I came over. It was as if the house of cards she felt she’d been building her entire life had suddenly crashed down. And she gave up, completely and permanently. Her life, the part outside that small, empty house, ended.
For several months, I’d come over weekly with groceries, each time suggesting that she come with me. After a time I figured I was enabling, figured she would get off her ass and do something when she needed milk. So I stopped coming weekly, and began to go less often, or come by late, saying I don’t have time to shop, but give me a list of anything urgent and I’ll bring that one thing back tomorrow. But she made no move to go, showed no willingness to move forward. I soon found she’d never even tried her portable oxygen; she refused it when I tried to get her to practice putting it on. She hated the sound it made (a demand valve, it makes a faint nose like a scuba regulator); she hated the way the case looked. She hated the strap, but refused a cart. She grew frantic at the un-balanced weight of it, even when lifting it.
It began to become clear she wasn’t going to go out. After a bit she asked me to get rid of her car because she didn’t want to worry about starting it any more.
On the other hand, she found ways, eventually, to be more self-sufficient. She ordered groceries on line, she shopped for things she needed by phone. Her pet store delivered cat food, her wild bird store delivered seed for the birds and squirrels she feeds obsessively.
This worked for a while. But she resisted any medical care of any kind, canceling any appointment she or I made, fighting with me over the mention, and panicing to the point of fainting the few times we went in. She would become combative with her doctors, insulting them and insulting me when I tried to help. And predictably, small things began to fail. She’s eighty years old; at that age, bolts start falling off the car.
Minor sores and wounds are non unusual with eighty year old skin. Aches and pains and difficulty sleeping are not a surprise. And my mother hates talking about these things. So we went along for months, me visiting every week or so, bringing fresh fruits, hot food, doing chores. And she’d complain about trivial things that hurt, and then change the subject when I said “let me look at that” or “let’s get to the doctor.” One of my great strengths is efficient, non-nonsense problem solving. But the flip side of this is that I don’t have very much sympathy for those who won’t take help, or who won’t take action to solve a problem. So if Mom bitched about her leg hurting, and then wouldn’t make or keep a doctor’s appointment, I shrugged and said, fine, then quit bitching if you won’t take action.
Trouble was, she was slowly sliding down hill. And I don’t have the patience, or the bandwidth, to monitor her condition if she wouldn’t admit it when I ask.
It wasn’t until the panic escalated that we got anywhere. And then, not very far, because, again, she would not follow a doctor’s instructions about care, and won’t keep a follow up appointment when its made. And so the condition has continued to grow worse, and my attempts to help have been rejected, or dismissed.
Mom’s pain, from sores on her legs, is now to the point of agony; her sleep has grown more disturbed. She became obsessed with the idea that she had diabetes (she doesn’t), and then that she had contagious infections (again, she doesn’t; the sores are from vascular disease caused by age, years of smoking, and general poor health). Her obsessive nature has gotten more and more focused on trivialities, her panic has grown worse, and her health, stable for some years, is now spiraling down.
I do not know if the decline in her mental state is the early phases of alzheimers, or if it’s simple age and prolonged lack of sleep. But her short term memory is nearly gone, and her confusion and anxiety seem worse each day. In the last three weeks, she’d begun to speak about ending things; though in truth I don’t think she’s serious. And if she is, I’m not sure she’s mentally or physically able; but her state of despair is profound.
And of course, Kaiser, her health care system – well, that story is saved for another time. To say they’re like a government agency does dis-service to government agencies. A profit-focused corporation, they make it painfully obvious that cost is the first and last thing considered in every medical choice, and that no medical order is carried out without business approval.
In short, though, this is the story I had to tell cousin today. Some of it’s old news; she’s helped as she can in caring for my mother (though she lives several hours away, and as a single mother of three, her bandwidth is limited). But she’s seen the decline over months. The story I told her today was tragic, and yet, both of us understood, the great tradgedy isn’t that my mother is old, and sick. The tragedies are that she has fought every step against help, and that the agency that gives lip service to care, cares only about cost, and not at all about the well-being and comfort of a confused, frightened, sick old woman.
Sam and I have both seen death. We’ve said goodbye to parents, and to a sibling (for she considered my brother to be nearly hers as well). She’s lost a mother to cancer. And when we talked today – the first conversation we’ve had in years – the un-spoken thought we shared was that we’re about to lose another one. And both of us know full well that all we want is to provide comfort and dignity, for the short time until that happens. Yet these things are in short supply, and we are powerless to provide either.
Sam and I have not kept in close enough touch these last few years. Our lives have gone off in parallel directions; careers, children, loves and losses and tragedies and joys. It’s been a long time since we shared a bed innocently as pre-teens, or hugged each other over some imagined adolescent misery, or played doctor, or slap and tickle in the swimming pool. Yet that was what I remembered after we talked today; the moments in my youth when she was, to me, the most beautiful girl i’d ever seen, the one woman I’d ever love. I remembered the sillieness of my crushes, and the rage when my brother would fight me for her attention. Those memories, good and bad, where of foolish youth and innocence. And what I wanted to was to go back, to before we had any reference for what pain or love or real life were and just play a game of killer or last touch, or to hike to the store up the hill from our cabin to buy ice-cube candies or peanut butter cups.
Hearing her voice, what I heard was childhood. And nothing ends childhood like becoming a parent to our own parents.
the above was written in one burst and not edited at all. I’d originally intended to re-work it later. *shrug* I didn’t.